We have come to the time of year where we focus on what we are thankful for and what has made a difference in our lives.

#MEAction and the Mayo Clinic have been awarded the Sigma 2024 American Nurses Credentialing Center Evidence-Based Practice Implementation Grant awarded by STTI.

You are cordially invited to The Beth Mazur Innovation Prize Fundraiser on Wednesday, November 13th at 2pm PST/5pm EST.

#MEAction is sending an urgent letter to NIH Director, Dr. Monica Bertagnolli, demanding that the NIH fund the ME/CFS Research Roadmap.

RECOVER TLC has opened the RECOVER-TLC Intervention Information Request Form, where you can make suggestions about which drugs and other interventions to trial!

I had the privilege of attending the RECOVER-TLC kick-off meeting while Jaime Seltzer represented the needs of the ME community in a panel discussion.

We tallied up some numbers from our #TeachME, TreatME campaign to educate clinicians and medical students about ME, and the results are fantastic!

We encourage you to share the Mayo Clinic Proceedings CME course on ME/CFS with your doctor!

#MEAction has just been awarded a 3-year grant by the Long COVID Program of the Minnesota Department of Health (MDH) to address the impacts of Long COVID, ME/CFS, and related conditions.

#MEAction’s Jaime Seltzer has been selected for TIME100 Health 2024, TIME’s new annual list of 100 individuals who most influenced global health this year!

#MEAction and Body Politic* are excited to collaborate with Home Test To Treat to share their critically important resource! Acute COVID-19 treatment and testing is unfortunately becoming harder and harder to access with the U.S. government public health emergency having been declared ended. The Home Test To Treat pilot program is a way to fill that gap in an accessible and equitable way. Home Test To Treat is helping to address some of the serious socioeconomic/healthcare ac

NIH’s recent paper on ME/CFS elicited strong reactions from the community.  While we recognize the incredible sacrifice of the patient community who gave their health and time to make this study possible, ultimately, we caution against drawing any sweeping conclusions from this study. The paper draws conclusions based on an atypical cohort that may not be representative of the ME/CFS community, and from a very small sample size, and there are also conclusions drawn in regards

With it being Black History Month, it was crucial to me to make sure we spotlighted someone from the ME/CFS and Long COVID community who is Black. Being Black and disabled is an entirely different experience. Not only do we deal with ableism, but we also deal with racism, especially medical racism. According to the Journal of Women's Health, “Black women continue to experience excess mortality relative to other U.S. women, including—despite overall improvements among Black wo

The NIH ME/CFS Research Roadmap public comment period is open now with a deadline of March 8th. #MEAction is a member of the ME/CFS Research Roadmap Working Group and for the past several months we have been advocating on behalf of this community within this group. Our Executive Director, Laurie Jones, served on the nervous system committee group prior to going out on maternity leave. She helped plan the first webinar and wrote drafts of research objectives with other committ

Last fall, #MEAction partnered with the Writers Guild Initiative (WGI) to offer writing workshops to twenty-five community members. #MEAction believed this partnership was beneficial to our community because self expression in the disability community is essential and writing allows us to get our thoughts and emotions onto paper. #MEAction recognizes writing as one of the ways we as a community are able to share our truths to create change and build awareness. There is power

On January 17th, 2024, #MEAction convened a constructive meeting with Dr. Ian Simon, the newly appointed director of the Office of Long COVID Research and Practice within the U.S. Department of Health and Human Services (HHS).The Office of Long COVID Research and Practice staff demonstrated a willingness to understand the connection between ME and Long COVID. As articulated during the meeting, a fundamental principle guiding their work is the mantra, “nothing about us without

The U.S. Senate HELP Committee held a historic hearing about Long COVID last Thursday to discuss advancing research and improving patient care. #MEAction contacted the press to alert them to the hearing, and issued a follow-up press release sharing highlights from the hearing, and explaining the connection with ME/CFS. Our Scientific Director worked behind the scenes to advise a number of committee members on their testimonies.  There was a large show of support from Senators

The U.S. Senate HELP Committee held a hearing on Long COVID yesterday to discuss advancing research and improving patient care.

The U.S. Senate Committee on Health, Education, Labor & Pensions will host a hearing on addressing Long COVID, advancing research and improving patient care TOMORROW, Thurs. 18 at 10 a.m. ET. Watch the hearing and find more details HERE.  Angela Meriquez Vázquez, M.S.W. will be one of three stellar advocates testifying about her personal experience with Long COVID. Vázquez is the former President of Body Politic, a grassroots health justice organization at the forefront of Lo

Alison Sbrana will be co-presenting our introduction to Canary Corps. on Wednesday. This is her story.